To ask for help defying a dying parents apparent wishes about care…

[Whyismycatanasshat]

I need to ask if anyone knows if there’s a way to stop my dying parent coming home to die instead of going to a hospice.

Long story. My parent is dying of cancer which has spread and has been hospitalised, waiting for a hospice bed.
Parent has always, always said they wanted to die at a hospice. 100% not at home. Even pre-cancer.

Today my other parent was informed that dying parent wants to come home and care would be organised.

Dying parent says they’ve changed their mind.
Hospital say dying parent has capacity and has rights to change their mind.

We have questioned capacity as we think it’s lacking and has been for some time but hospital say they have capacity.

Hospital say hospital bed will be provided: carers will be there 24hrs a day.
Other parent (early 80s) does not feel they want dying parent at home.
They have expressed feelings of vulnerability about having carers (“I’m worried about having strangers in the house with me. It frightens me a little.”) and knows from my DBs passing that the 24hr care at house doesn’t always happen as planned - there was several no show carers. Which was horrid.
Also, they feel they will have no place for respite themselves - they are struggling mentally at the moment - as dying parent will be in the living room of the 2 up 2 down house and all surviving children are at least 2hrs away.

Is there any way I can help my parents in this horrible situation?
As awful as it sounds, I think a hospice is the right place for dying parent and other parent needs to be considered too.

The opening post literally says 24 hour carers. Having gone through this, the carers were 24 hours.

My mum died at home. It was what she and my dad wanted but I have never felt more out of my depth. We were lucky that my sister is a nurse with significant experience in end of life care with the elderly so knew what equipment was needed and what to ask (push) for. My mum was discharged from hospital with a supposed care package in place except it wasn’t and wasn’t put in place until I contacted Social Services

My mum’s doctor and the district nurse were brilliant at visiting but it was still a horrendous experience. I cut my hours at work so I could visit every afternoon to relieve my 80 year old dad but I visited more than once to find my mum on the floor as she had convinced my dad to try and help her to the bathroom. We only got overnight help from the local hospice or Madame Curie in the last couple of nights.

Our experience was better than a lot of people’s but I wouldn’t put my family through that. It was only later that I realised Nursing Homes often offer End of Life care.

@Whyismycatanasshat .this is a horrible situation to be in. Whilst i agree ideally dying parents wishes should be met. it appears they arent- as no hospice bed so their hand is being forced. thats unfair all round.
given past experience and serious concerns of mental welfare of other parent.
re you able to visit dying parent and speak in person with hospital.?

I know, why don’t YOU have your parent at home with you in their final days? Then your other parent doesn’t have to put up with supporting their spouse in their final days?
Absolutely grim!

I tell you what is grim. Berating someone who is going through something incredibly difficult, THE most difficult thing, someone who is grieving and worried about their vulnerable parent.and.exhausted and stressed.

Just horrible. Absolutely empathy bypass on here. I'm so sorry @Whyismycatanasshat .

I would post in the bereavement area instead.

Oh yes, what a stunning idea that is.

Move a frail, dying person a couple of hundred miles from their Drs, hospital, potential hospice place...

Into a home with adults who work and have small children to look after.

That'll work out just fine for everyone, everyone will have their needs met and no one will be at all traumatised or in pain/discomfort at all.

I know, why don’t YOU have your parent at home with you in their final days?

Because that isn't where the dying parent wants to be!

It's a cathartic thread.

to all who are going/have been through this.

I recommend reading 36 Hours by Fiona Mason.

@48Hourss I don't doubt your experience, I just know it isn't something routinely offered around here, whereabouts in the UK are you ?

Well, if I was the other parent, I would move out.

Very selfish of the dying parent to do this.

I read this quickly and thought you were being ironic and playing Devil's Advocate.........but you were serious weren't you?
Bloody hell..........

Selfish?!

Are you for real??

Yes, very selfish.

Yes, I am. I would never do anything like that.

If the other parent does not want to do it they should not be forced to.

Very very selfish.

There do seem to be some posters on here with ideas about EOL at home that have no bearing in reality for many.

I've done it for a parent with a full care package in place - 4 x 2 carers a day and a 'sitter' (no qualifications) overnight most nights. It was very very hard, exhausting, stressful and there is no way on earth I'd agree to do this again. I've also accompanied someone terminally ill who died in a hospice and it was so much better - pain relief, personal care, family able to spend time with their loved one.

The reality of at home is waiting for pain relief that may or may not arrive in time. Never being able to leave the house because the carers are barely there, or are late and you can't leave the dying person alone. This causes problems with basic things like shopping for meals! Two carers at a time coming from other clients meant they seldom arrived together, so sometimes one would need to leave before the other. Or I'd have to be the second and operate the hoist, commode etc. Keeping on top of the laundry - double incontinence can create a lot of mess!

If the overnight carer fails to turn up or isn't available every night then someone has to stay up all night. Even if you stayed up the previous night too. It's worse than having a newborn. It only works if there are multiple relatives to tag team this.

My relative talked frequently about going "home" and did die at home. But I'm very sure he meant back to how life used to be when he was young.

It's very easy to think you'd definitely have someone home to die. And if you're not 80 you can probably throw everything at it but it isn't always as quick as a day or two. How many small children and/or jobs can be abandoned for days or weeks at a time?!

But all of the posters on here know that 99% of the time this simply isn't true. The care sector is under staffed, under unfunded and yet the need is massive.

Think about the logistics of finding 24 hour care, where exactly are all these nurses, they aren't just waiting in a warehouse ready to be assigned to a patient.

I'm glad you had a positive experience, I do wonder when you had this experience, or if it was funded in the UK

If OP comes back after her parent has sadly died, and says that they had 24 hour home care throughout, I'll donate £50 to Marie Curie nursing.

Yours is the only example of this that I've ever heard.

I have never heard of someone having 24/7 EOL care at home. In a hospice yes.

The reality is up to 4 15 minute visits from carers during the day and a sitter on occasional nights doing 10pm to about 6am.

@Whyismycatanasshat I have been thinking of you all day. I hope the hospital realised that it is unsafe for both of your parents if they discharge him to the home. I cannot imagine how they think that you mum is able to do the manual handling it will take.

For the people saying it should be about the dying person's last wishes and respecting those ... Unsupported EOL care by the family can cause significant and long lasting trauma for the relatives who do that care. My dad changed his mind again when the pain got worse ...in his lucid moments he begged me to hold the pillow over his head. I still have nightmares of him coming out of his grave 2 years later asking me why I let him suffer. I cannot get past that to grieve.

My family were promised carers and 24 hr support. The district nurse called in every couple of days and the 24 hr support was press option 6 when you call 111. On the day he died we hadn't had carers in for 2 days because we could tag team as a family and they were at capacity.

In this situation he will be discharged into the care of an 80 year old woman. If he needs the toilet he will have to lie in it until a carer can come in to help her. It is not safe for her or him.... Despite his wishes that is not going to change.

This is a really good point from @EmotionalBlackmail

"My relative talked frequently about going "home" and did die at home. But I'm very sure he meant back to how life used to be when he was young."

Lots of people (relatives of friends, my own relatives, and I've seen this in care homes too) will repeatedly state that they 'want to go home'...

And then they get home they are unhappy or in fact KEEP saying they want to go home..

Because they want to go 'home' to... 20, 30, 40 years ago, when they were fit and healthy and young and so on. Not now!

I hope there was some progress today, OP, and a more sensible plan put in place.

In my 18 years practicing medicine I have never experienced a successful home discharge of a terminally ill patient where
the family were actively resisting it. It just wouldn't, and couldn't, happen. Caring for a dying person at home requires huge input from multiple capable family members - even if your mum was willing to do it, it would be a big ask for a frail 80yo. If she's not willing or able, then it's an absolute no-go.

It's available privately with private nurses if a family has income to pay.

I know of a few families who have employed private HCP for this.

For the very rich, that's an option. It would cost £1000s per week. It isn't feasible for the majority of people.

What if people don't though? Anyway, this is meant to be coming from CHC. It's the logistics.

We are very likely to be talking about a double assist care package at least when moving is needed, certainly 24/7 mentioned. I share the educated doubts of people on this thread who are dubious that this is going to work in any way seamlessly and an 80+ woman in poor MH, who has already nursed a son until his death, will not be left in a situation she says she can't cope with, because the husband who adamantly said until yesterday that he wouldn't want to die at home has changed his mind, while exhibiting variable capacity.